A Families Story About Living with Autism:
In my work of mentoring autistic teens, I am struck with the level of trust, humility and indomitable spirit that I see in these families weekly on their paths to rising above others limitations of them. Mentoring autistic teens has been a truly transformative experience for me and it is such a pleasure to give the clients and the parents new tools to thrive in the world “out there”.
I would like to share one story with you from one of my clients and his mom’s perspective:
I knew my son had a brilliance inside of him that was just waiting to come out … if we could just get past this “autism thing”. At 3 ½ years of age, Stephen was working with a speech pathologist to work on his receptive language skills. There was a set of blocks and a Winnie the Pooh figurine sitting side-by-side on the table.
Pathologist: “Okay Stephen, I want you to put the blocks in front of Winnie the Pooh”
Stephen turned Winnie a quarter turn, so that Winnie was no longer facing forward, but rather facing the blocks. From the sideways angle, the blocks were now in front of Winnie the Pooh on the table.
I was seven years old when I got the diagnosis for autism and ADHD. At first I felt very angry at the person who made this diagnosis, because I thought they were saying something was wrong with me. We eventually learned to deal with the fact that I had Autism, and that I did have some problems.
The situation was looking very grim. That same year in late second grade, we used some ADHD medication to try to have me pay attention in class. The medication worked as intended, and I was able to pay attention to class, but the side effects were painful to my quality of life.
Mom: Some teachers “got” Stephen and some didn’t. The ones who “got” him had their hearts stolen by a little guy who filled their hearts with joy. We are truly grateful for the way that they connected with Stephen.
Stephen: The medication made it so that I would no longer feel hungry at the normal times when I should have a meal, and I began to get skinnier and skinnier until my ribs would show entirely, and I felt a significant lack of energy. Eventually the ADHD medication was dropped in favor of supplements as an alternative as I moved into the fourth grade. My body slowly but surely returned to its normal shape, and I was able to pay attention in class because of the supplements, which had a similar effect (such as the fish oil).
With all of these supplements, my academic level went up at almost at a superhuman rate. I was then able to move schools gradually until I got to where I am now.
Mom: A diagnosis is truly a double-edged sword. I tried, in the first few years to keep it a secret. But what I have learned is: don’t share this burden alone. Give others a chance to step up and help you lighten the load. Some won’t step up … they just don’t get it. But you would be amazed at how others do … including children.
Stephen: I am in a fairly mainstream school now. Most qualities of life that you would expect from perhaps an above average life have been fulfilled. I now have unlocked a higher piece of myself allowing me to write these articles that I share with others such as you.
Ken Rabow – A life coach specializing in mentoring teens: Although I hadn’t known it at the time, a standard test that Stephen would give potential mentor/therapists for Autistic kids was to talk about his complete feeling of betrayal by grownups and how they manipulated a basketball game with his fellow Asperger students vs. the local highest winning basketball team to let his team win.
Previous Mentors had told him to “get over it” whereas my response was “hey, let’s write an article about your feelings, shape them into a learning moment and see if HuffPo would publish it! They did ☺. This was a defining moment in Stephen believing his voice could and should be heard. To check out the article: click here. Mentoring autistic teens is also about learning to really listen to what they are saying and meaning.
Stephen: The struggle with Autism has been quite the battle. Many tears were shed, many issues were fought, many goals were achieved, many hearts opened, many friends made and many lives changed.
Mom: I felt that it was always important to share how much he had grown with Stephen … especially on days when things weren’t going so well or when he was down on himself.
As someone mentoring autistic teens, here are some things that I would like to tell parents of children on the spectrum:
Try to not be totally devastated by the diagnosis. They are still the same lovable, adorable child that you had before and you can have the same dreams for them.
Don’t ever let other people put limits or ceilings on what your child can do. Trust your gut. Trust that inner brilliance that you see and work like hell to find people to help you pull it out. You can teach your child to behave in a neurotypical way.
Embrace your child’s differences and let yourself dream of the way that he or she might change the world.
Ken: Who better to share their thoughts then people who are living it? In mentoring autistic teens I have learned when to keep quiet and let them speak. I leave the last words of wisdom to my awesome client Stephen:
Stephen: So what is the moral of the story? I am talking to kids like me who have been given a diagnosis of Autism: You could say that where you are now is not necessarily where you will always be. My thought is that nobody is only destined to one path.
I believe that the force of will is what determines success or failure, not fate, destiny or diagnosis. That most people on the autistic scale can reach the level that I have and perhaps even greater. They just need the right parenting, the right mentors, the right people in their lives and most importantly… persistence.